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Learning Disabilities, Adhd, Ect


houswoea
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Hi Friends!

I am looking into a research project proposal for a class I'm taking. I am interested to see how many people with dysautonomia meet the qualifications for a learning disability (any kind, dyscalculia, dysgraphia, dyslexia, processing, ect) or ADHD (either type, inattentive, hyperactive, or combined).

There are a couple questions which I am considering looking into, including the using a label of Other Health Impairment instead of LD in individuals with medical problems and learning difficulties, or possibly a tentative link between life-long learning disability and early onset dysautonomia.

If there is no link, I'll figure something else out. It may be coincidental, since 11% of the school age population receives special education.

I'll go first! I have dyscalculia and visual reasoning dysfunction (I'm bad at math and I can't draw) :-P

I don't believe the two to be connected. The LD came first in my life. However, I have noticed a dramatic decrease in my ability to pay attention, which is certainly contributed to POTS :)

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Very interesting. i believe that there IS a correlation between dysautonomia & LD's. Glad you are looking into this & I'd be happy to help you in any way.

Mack is DXed with a multitude of learning issues- He has an auditory processing disorder, NO auditory memory, he's been DXed with dyslexia, but his presentation isn't typical- for instance, he CAN spell (we think that's memorization as he is visually gifted.) He has very slow speed processing-7%ile. His IQ is in the 75%ile and he's been able to be successful in school with extra time on tests & quizzes (as needed) and with multi-sensory instruction. The LD DX came before the extreme dysautonomia symptoms although he's shown signs of that from birth.

Best of luck. This is a very necessary & important study.

Julie

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That's really interesting! I'm specifically interested in the processing aspect of learning disabilities and dysautonomia. Now that Mack is doing better health-wise, have you noticed that his processing issues have worsened?

Also, you mentioned sensory issues... this is another aspect which I believe connects with dysautonomia completely.

Also, has he been re-evaluated after the diagnosis?

You definitely don't have to tell me anything you're not comfortable with, I am just curious. I hope to find a better and somewhat clearer intervention method for individuals with dys. who need academic help, especially since so many children are being diagnosed at this time.

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Hi,

this is very interesting.

My sister has dyslexia and is extremely intelligent. She has trouble with P, B, D etc which leads to interesting text messages and emails! LOL She is yet to be diagnosed she is just starting her journey after being diagnosed with ME over 20 years ago. Now I have my POTS diagnosis she is hopefully going to be tested.Plus I am being checked out for EDS and hopefully again it will pave the way for her.

I have the dyscalculia - awful at maths just get number blindness. Although when I did my exams at school in my group I was good at algebra. We had ongoing assessments, on the basic maths I would get an E grade, when it came to algebra I would be one of the few that got an A. It makes no sense but a while ago there was a maths prof on the TV. She had dyscalculia she couldn't do basic maths but could do trig and algebra! So I am not alone in my weirdness!

I also had problems telling the time - didn't understand a clock face at all. However thanks to the introduction of digital watches I could get away with it. It wasn't until I was about 18 that I could tell the time. If I had a normal watch on if anyone asked the time I would have to round it up to the quarter to, quarter past, half past, or say it was xx o'clock. I was so embarrassed at my inability to tell the time I never told anyone. How do you explain that an A grade student in all areas except maths can't tell the time?

Sorry I have rambled on!

Rach

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To answer your questions, as Mack's health improves; I suspect his learning issues do as well. We will soon quantify this as he needs new psycho-educational testing prior to starting college next year to hammer out his accomodations..

When I refer to multi-sensory teaching methods, I mean the combination of auditory, visual, and kinesthetic instruction. Because of Mack's auditory deficits, a very visual & kinesthetic (hands-on) teacher is his preference. ALL good teachers should use a multi-sensory approach.

So proud you are tackling this. Do some research prior to starting. Others before you have found a link with ADD/ADHD & dyslexia to dysautonomia. It's been touched upon, but never fully explored.

Julie

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This would indeed make a very interesting research project. My son had difficulties in school from the get-go, long before his dysautonomia diagnosis. Though not officially diagnosed as far as testing, etc., his pediatrician at one point said he felt he was classic ADD, and there have clearly been issues with dysgraphia and dyscalculia and big issues with memory. In retrospect, I also realize there were signs of dysautonomia long before he was diagnosed and frankly believe the dysautonomia was likely there from birth. I now firmly believe that the root of the problems is the dysautonomia itself and certainly for my son it is the dysautonomia that is far and away the primary problem. ADD and ADHD are so prevalent among kids now. I often wonder if some of the ADD cases are not actually a mild form of dysautonomia and that dysautonomia is actually the primary issue for them as well. My daughter also has dysautonomia and while she has had significant improvement relative to my son she still has very significant issues with fatiguing with exertion of mental energy and she also complains of difficulty focusing. She is struggling to take a few college courses now and finding it a huge challenge, to put it very mildly. Like my son, the biggest issue with schooling for her is the very quick onset of fatiguing with exertion of mental energy. However, she also has difficulty focusing at times and interestingly I had some Adderall left from our large array of medications that we have tried in the dysautonomia maze. Previously it had not been of benefit, but she currently finds that it is a little bit of help with helping her focus when she is having a lot of trouble with that specific issue.

There is no doubt in my mind that there is a link with these kinds of issues - the question is which comes first. I personally believe these issues are part of the dysautonomia. You have a great idea to make this a project. Keep us posted, and I would be happy to contribute info from our experiences if so needed.

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Thanks everybody! I have some follow-up questions:

Rach73- Have the medical problems been evident from early age for you and your sister? And I can't tell time either! Definitely fail at algebra though, they call that "symbolic dysfunction". I just can't understand why X3 and 3 aren't the same. But in the end, I didn't need it. yay!

Mack's mom- I should have clarified, sorry, I know you were saying receiving multi-sensory instruction has helped Mack, and that's great! In classes I've learned that not a lot of scientific evidence supports it, so if it works, there must be something in that curriculum that is helping Mack create strategies on his own. Neat, right? Anyways, I thought I would ask if he had sensory issues, meaning over-stimulation/ under stimulation. Usually, I see that dys. people get overstimulated, especially the kids, and that plays a role in academic success. With this project, after I propose and if I decide I can take on more responsibility without pushing my body too much, I may be able to get people to ACTUALLY research this! But the problem is that no one has heard of dysautonomia, ect and so no one knows how much it's affecting the school system! So they may not find the research to be needed!

Potsmom- does your daughter receive accommodations for college? She could record the parts of classes she tunes out, and then listen to them lying down! :) Her professors may be willing to help her catch up too if they know she has medical issues! I like my accommodations because they facilitate communication between my teachers and I! It's very interesting about your son... that information is helping me think about what I want to narrow this topic down to. You said there may have been memory deficits- my question is, did you ever notice any processing trouble? Like he wasn't understanding in the first place, or that he struggled to find names for things (ect "Mom, did you see the thing happen at the place?") This is one aspect I am really leaning toward.

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Mack's mom- I should have clarified, sorry, I know you were saying receiving multi-sensory instruction has helped Mack, and that's great! In classes I've learned that not a lot of scientific evidence supports it, so if it works, there must be something in that curriculum that is helping Mack create strategies on his own. Neat, right?

Really??? There's NOT a lot of scientific evidence to support the effectiveness of multi-sensory instruction? You could knock me over with a feather :rolleyes: Most of my experience comes from the dyslexia/language side of things. I have been taught that affected students either have an auditory or visual processing disorder that interferes with their ability to learn to read. Mack's is auditory. He can hear perfectly, but his brain is unable to process what it hears. He also has NO auditory memory. No matter how many times a teacher would work in ONLY this modality, phonological sounds, etc.; the further lost he would become. Once a teacher added visual aids (writing the syllables & sounds on a blackboard) in addition to the auditory component- he was able to grasp things very easily. This is the basis of the Orton-Gillingham Method of teaching reading.

Think about it....we all learn via our senses. If a student is severely compromised in one of them, the unaffected senses become the primary channel of receiving information. For instance, if a student were blind & his teacher ONLY used visual channels- writing on the blackboard, using traditional written material (non-braille), etc. HOW would this child learn? By utilizing the auditory (spoken) & kinesthetic (braille) channels, a teacher could begin to instruct this child.

I stand by my comment that every good teacher MUST utilize multi-sensory modalities to be effective. If this notion has gone out of fashion or has been proven to be ineffective, I would seriously question that.

You are right. Mack has created strategies on his own to learn very effectively, but only because his teachers are multi-sensory. Every once in a while, he will have a teacher who is very auditory & doesn't even use a text book. He recognizes immediately that he will be unable to learn & works with his guidance counselor & the teacher to get the information delivered in written form. He can then teach himself & has a concrete reference to compensate for his lack of auditory memory. In his latest psycho-educational report, he is called the "King of Compensation" :D

Anyways, I thought I would ask if he had sensory issues, meaning over-stimulation/ under stimulation. Usually, I see that dys. people get overstimulated, especially the kids, and that plays a role in academic success. With this project, after I propose and if I decide I can take on more responsibility without pushing my body too much, I may be able to get people to ACTUALLY research this! But the problem is that no one has heard of dysautonomia, ect and so no one knows how much it's affecting the school system! So they may not find the research to be needed!

Sure, when he is very sick- he is very quickly over-stimulated. He is unable to even ride in a car, much less attend school. I hear you regarding the lack of research. I suspect that you will have the most luck as far as establishing a research base if you look into the cognitive effects of chronic fatigue syndrome. Research has established a strong link 90+% between autonomic dysfunction and CFS. There is quite bit of information out there on this topic. You certainly have your hands full with this project :blink:

All the best-

Julie

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Mack's mom-

Yes, it is strange isn't it? I had always heard that learning styles can help people academically. However, nowadays, after doing research on the subject, science people have decided that not only are learning styles not useful, but they don't even exist! It was certainly a strange thing to learn! I would never have known! But that's how educational psychology is, one second they’re here, another second they’re laughing at everyone who used the last method.

I am a strong believer that kids with learning disabilities can learn what they need pretty quickly and create a system that works well for them. I know that’s how I got through math. I’m sure whatever is working for Mack is working for him! I’m sure he will do great things in college!

It won’t be as broad as all this, for example, I’m thinking about focusing on third grade and younger (my area), I won’t be doing any medical research, and I will pick a specific topic that is more narrow. That will make it easy! Deciding to try to get the research done will be harder.

I am looking into different kinds of research on processing disorders and autonomic dysfunction as of now. This will most likely be the key to what intervention method to follow.

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Hi,

In regard to your question were our medical problems evident as children.... The EDS issues yes but undiagnosed.

My sisters autonomic problems came to a fore when she developed ME as a teenager at that point she would have had the dyslexia diagnosed for around 6-7 years. Like Macks Moms son she has real problems with short term memory due to the dyslexia so a variety of teaching methods / styles have to be employed to help her remember. You could say something over and over and she wouldn't remember it.

I started getting problems with dizziness / fainting from about 15. I just put it down to low blood pressure. Then from the age of 30 things got a lot worse. If I stood up too quickly I would get very disorientated and have to hang onto something, again I just put it down to low BP. I had a couple of nasty pre syncope episodes where if I hadn't managed to get to the floor my body would have taken over and done it for me. Then at 33 is when I got really sick. I don't know what triggered it I went to sleep feeling fine on January 4th 2007 and woke up January 5th with a horrific migraine and life hasn't been the same since.

Rach

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I have struggled horribly with math since I hit Algebra. I've never heard of dyscalculia, however. I'm going to look it up right now. I also can't draw, and I would love to be able to!

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My daughter has not established disability with the school. When she went in to get info about starting the process it was clear that the lady handling it already didn't believe her and was going to be difficult. With all the fighting we had to do to get daughter through high school with the 504, she got discouraged and didn't pursue it. I told her that at the beginning of next school term she must do that and I will go with her. Meanwhile she has gone in and talked with teachers individually but no she doesn't have formal accommodations. While she does have the focusing issues that certainly interfere, especially with lectures, her biggest problem though is extreme fatiguing with concentration and engaging of mental energy in order to concentrate - and this happens even lying down, and she always studies lying down. She tires to the point of exhaustion within a very short time. I am not sure there is an accommodation that will help with that, unfortunately.

The memory problems with my son showed up in kindergarten. In his school they taught reading using phonograms which required memorization and also the process of putting that all together. He struggled to learn to read because of that. When we moved him to a different school in first grade and they taught just by normal phonetics, bingo he got it and moved on. Then trying to learn math facts was the next big struggle which complicated math more and more in general as well. Anything that required memorization was a bear. Third grade he began to complain of stomachaches that he later on told me he realized was actually nausea. Then in fourth grade as homework became more prevalent he would forget assignments, forget to bring stuff home that he needed, etc. etc. That is also when we began to see more visible signs of fatiguing, though in retrosepct he had from a very early age tired easily. It was a progressive struggle in every way. During the fifth grade year the struggles both academically and physically became even more pronounced. I think the most telling thing academically was when we got the results of his standardized testing from fifth grade. They had gone from good strong scores in fourth grade to considerably below average - across the board. It was an astounding contrast when we looked at the two years' results side by side. Now I know exactly what happened - he got so tired trying to read and process the questions that he couldn't do it. It was a few months later that the dysautonomia was finally diagnosed and suddenly everything made sense. You asked about difficulty finding the right word - I really don't see that as an issue - occasionally but not routinely. He did have some testing in sixth grade, in fact just before his diagnosis, that documented problems with working active memory and short- and long-term memory, some attention issues, and dysgraphia.

While the focus and memory issues are a problem with both the kids, it is the overwhelming fatigue with concentration and exertion of mental energy that is the most debilitating. I believe that the exertion of that energy triggers the pooling and thus they don't have the blood flow and oxygen that they need for that task. The best I can describe it is it is like a faint without loss of consciousness. It makes education a monumental challenge, to put it very mildly.

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That's really awesome that you're looking into this. I'm interested in what you'll dig up.

Here's my timeline, as best I can put it together.

At 13/14, undiagnosed NMH started causing problems. ("It happens to everyone; you'll grow out of it." :rolleyes: I love that one.)

My grades were good in school, but looking back it was because I was very, very lucky. I never could concentrate long enough to study or really do my homework, but things that interested me stuck with me - any, by some miracle, most of my classes DID interest me. The only thing that could get me focused on a task was time pressure, so I did most of my homework the period before it was due but it always seemed to work out. I could also bs my way out of anything. That helped. :lol:

At 20, I was treated for IST. I'd always had a fast heart rate, but one day it suddenly got worse. I'm not sure if I was mildly POTSy before that and it was just a symptoms jump or if this was the true start. I do know that my ability to compensate for my forgetfulness/procrastination started to go down.

When I was 23, I finally went to get evaluated for ADD. I was driving myself nuts, losing things and not paying attention in class. My mother and brother both were diagnosed a year or two before, and it runs in families. The psych diagnosed me with it pretty easily.

Then, at 24 the POTS symptoms got suddenly worse. So did my concentration. After a bit of legwork, it finally led to a diagnosis of POTS and NMH.

My primary doc suggested that the ADD is fully POTS related, but I think that I do have ADD. POTS definitely worsens it, but it was around long before any dysautonomia symptoms. It was always a running joke with all my friends that I had ADD. Even back in first grade, I was flakey. I handed in a half finished math test, not because I ran out of time or couldn't figure the problems out. I just forgot to finish it. :P

Also, I noticed a definite difference in what the adderall was doing. When I first started taking it, before POTS started being a real problem again, I could focus. I mean, it was like night and day. The best example I have is that I was able to concentrate and stay on task long enough to organize my bedroom and closet. May not sound like a big deal, but it was HUGE for me. :P I have never, ever been even the slightest bit organized, no matter what I tried. I think I cried when I was done with the room, I was so happy.

But after POTS started acting up again, I got the adderall dose increased to help deal with the mental fog. It helped wake me up, but it wasn't like the mental switch that flipped when I first went on adderall. It was more like a strong cup of coffee after a sleepless night.

I hope that helps. :)

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